Posted in Archive, covid-19, february 2021

Covid-19 Vaccine with Chronic Conditions

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Covid-19 Vaccines have been rolling out for several weeks now. I am fortunate enough to have had my first vaccine, Pfizer, administered last Saturday. The uptake the vaccines for Covid-19 has been fantastic to see. However I am aware from the questions that have popped up on my facebook page, and private messages that there some concerns out there on how safe these injections are for people with chronic health conditions. A worry I completely understand. I have a history of anaphylaxis myself to certain foods, and a have had psychotic reaction to two different medications previously, it has left me very wary of trying any medication that I’ve not previously had. But I’d much rather trust in the figures that say its going to be ok, than risk catching Covid-19. I’ve put together information gathered from a few of the charities/societies that this represent the conditions this blog covers, in the hope that it will provide those of you who want some information with what you need, and reliable resources to turn to (all the sections are hyperlinked so you can link through to them).

Covid-19 Vaccines| Dystonia UK

Dystonia UK put the safety of the vaccinations to their three medical advisors, all three agreed that it was safe for Dystonia patients to receive (including those receiving botox injections). It was suggested that if you have not already heard from your dr/gp in regards to your vaccination appointment and your breathing is affected by your Dystonia then it may be worth chasing this up.

Covid-19 Vaccines| Ehlers-Danlos Society

For those with Ehlers-Danlos who are wanting to talk to their Dr I recommend going to the Ehlers-Danlos Society website where there is a link for advice for clinicians on the matter. The site currently states that they are note aware of any studies that have specifically examined EDS or HSD with covid-19 injections. However those who have chronic conditions that could be made worse if they were to develop covid (including potentially Long Covid) the benefits of protection from the vaccine outweighs the risks associated with the infection on vaccination side effects.

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Covid-19| PoTSUK

For those of you with PoTs/Autonomic Dysfunction/MCAS who are specifically interested in the vaccines ingrediants list then click here. This will take you to the PoTS UK page dedicated to information on Covid-19 vaccine info, where you can find a full ingrediants list for both the Pfizer and Oxford injection.

The recommendation that PoTS UK are giving so far is that for PoTs patients, if your condition is uncomplicated then it is not a contraindication for the vaccine. If you have MCAS and experience very severe allergies, you need to discuss whether you are suitable for the vaccine with your allergy specialist.

Further information can be found on the link given above.

Personal Experience

I had my Pfizer vaccine jab 7 days ago. I was invited to book after being deemed extremely clinically vulnerable throughout the pandemic. The set up was simple, our local rugby stadium has been converted into a vaccination centre. Volunteers split us up as people arrived, those who were there via the mass vaccination scheme to one room, those for the GPs vaccination, like myself, into another. After confirming who I was, and being given some literature to read through on the jab for afterwards, it was done. Personally found it less painful than the flu jab, and far less painful than botox injections! It was then off for a 15 min sit in a chair to ensure that there were no unwanted side effects before being allowed to leave.

Side effects wise they have not been to bad, my arm has been a bit achy and I felt very low energy for maybe 36 hours. Quite similar, but not as bad, as to how I react to the flu jab. The provided information leaflet, did warn that the second jab could provide slightly more side effects, however I’ll take a couple days side effects any day in exchange for proctection.

Overall nothing to be concerned about. Relatively quick, very easy, fairly painless.

Posted in Archive, January 2021

The Test Results Are In

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After spending the last several months in and out of hospital, losing the sight in my eye for an extended period of time and only partially regaining it, losing all sensation in my right leg and experiencing sensory issues in my arms I was once again told it looked like I had MS. Yet the examinations didn’t agree. I was left battling for help as different hospitals and departments seemed to find it impossible to communicate with each other. Well the most recent test results are in! We finally have an answer.

If I am honest I had almost given up on a diagnosis other than unknown complex neurology condition with global sensory loss. None of my Drs were communicating with each other, no one could agree with each other and that was resulting in me receiving no treatment. It has been a period of high stress and extreme emotion.

Today I finally had my Emergency Video Consultation  with the local specialist in Neurology; this was requested back in October. Firstly they are agreed it isn’t MS which is great confirmation. What they are sure of is that is another part of my Ehlers-Danlos Syndrome. Apprerently when I’m dislocating my knees the nerves around it are being over stretched and damaged hence the loss in sensation/function. The same thing had happened to my elbows causing the sensation I was getting in my lower arms and hands. This surprised me greatly; mainly as I had in fact asked the doctors this very question when I was on the ward last year and they laughed at me for suggesting it. In regards to my eyes the nerves are not communicating with my brain effectively, but are not damaged like you get in MS.

He’s suggested we get me booked in with my EDS consultant for some advice in the meantime on how to cope with these symptoms as they can last a significant amount of time.

So whilst the EDS is generally on a slippery slope currently and it’s all about managing it, keeping on top of my pain and being proactive, I feel that overall it was a very positive chat.

Posted in Archive, January 2021

Improving Routine To Improve Pain Levels

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Health conditions can have both a physical and emotional toll, for example chronic pain; this can impact your sleep, cause more fatigue and leaves you starting the day just as drained as when you went to bed. A routine can change all that.

Now I’m not suggesting you plan out every moment of your day!

However a well thought through routine can empower your day, lowering your pain levels over all as you’ve optimised the way you have used your body.

It’s worth asking yourself when is your pain worse in the day? What activities does that impact? Make a list. From here you can proactively look at your routine and adjust how you manage your day which in turn should lower your pain levels. An example of this is if you struggle more in the mornings, then lay out what you need (or ask someone to help you) in an accessible place. This will save you time and energy in the morning.

Make sure to include time for you in your routine and space out energy consuming tasks over the day. If there is a task you are particular struggling with think about how it can be altered. For example, when chopping vegetables does sitting on a stool help? Would buying pre-chopped vegetables be a more realistic option? Is there someone else who could do this task for you?

Doing to much will result in a Boom and Bust cycle. Pacing is your friend.

I’ll be live tomorrow night with more on the Boom Bust Cycle.

Posted in Archive, January 2021

Lockdown, Homeschooling and Work

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With the introduction of the new lockdown I had had been planning on getting crafty with the kids again. That idea was snuffed out after an email landed in my email box confirming that nursery would be doing live home lessons followed by tasks to be completed, photographed and emailed to his teachers. All well and good except my partner works shifts and I have an 18 month old whose favourite word is no, also takes no as a yes and will most deffinently try to touch every key on my laptop.

So today was the first home school lesson. After half an hour of technical wrestleling we finally got on to Teams and were met by a chorus of STEFAN. The children were happily mucking around with each other, my daughter was desperately trying to join in and the teacher? Her laptop had the same issues mine had to start with and never made it to the lesson. Round two tomorrow!

Dystonia and Me Holistic Health Coaching is officially up and running which has added a lovely touch to my evenings. I have been thoroughly enjoying chatting with different people with a range of issues and starting them on their journeys with me.

Colourful heart enlarging in further colours being touched by a human figure in blues and purples

I would love to hear if any has had the vaccine yet? From the calculator I predict mine to be late Feb to March at the current injection rates and would be interested to hear your experience in the comments. I personally will be accepting the offer of the jab, I just would like to go in to it eyes open to side effects.

Posted in Archive, January 2021

Return To The Gym

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After a lot of discussions with my family and my medical team we decided that it was finally time for my return to the gym. I have not been since my battle with sepsis in January 2020. However if we are being honest there was no way I could have have returned in 2020; I spent a long period bed ridden, my Ehlers-Danlos syndrome progressively worsened and that’s before we factor in Covid. My 2020 health spiral ended with unexpected weight gain of almost two stone in a month. Considering I live on 1, 200kcl a day that comes from perscriped ensure juices, the sudden and extreme gain is disconcerting.

Now while my GP is investigating causes into the gain, I’m also taking a practical approach. I used to have a fair level of fitness and enjoyed going to the gym. Whilst it left me shattered afterwards and with sore joints, I also found I benefited with less extreme spasms after. Today’s reintroduction was a gentle session for the most part, testing what my bodies current capabilities are; I chose a recumbent bike session followed by different weight lifting machines.

First time back in the gym

I certainly don’t feel as energetic as I did this morning; far from it. I’m completely out of spoons and sore. However I am chuffed with how well the session went and am looking forward to the next one.

No spoons

Posted in Archive, December 2020

Let’s Bin Perfection.

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What is perfection? It’s a word that we toss around like it weighs not a thing, when the reality is that’s a ball and chain dragging our mental health through the mud chasing after. I’m sure my own view of perfection is mighty different to yours! If it wasn’t then it would be a case of bottling up a potion or creating a word doc telling you what steps to follow to achieve perfection and selling it for a killing; I’d be able to have my own purpose built bungalow. No it’s different to all of us yet we all seek it.

It’s the little negative moments experienced that make us seek it. It’s the old man tutting and shaking his head repededly at me because he couldn’t push past my wheelchair easily. It’s the side eye and the sarcastic comments that are made by people who don’t understand ambulatory wheelchair users exist. It’s dislocating 15 times in one day and just having enough. It’s all these things and so much more that make us want to chase perfection.

The fog of insecurity in our brains full of thoughts like if I just weighed less, if I wasn’t chronically ill, if I wasn’t in my chair, if I was more like them; it’s all based on the negative moments and turned into insecurity and self doubt. It’s a weight that no one needs.

But chasing perfection is futile. It’s an unachievable concept. It’s time we move away from it. On that note can we bin chasing normal as well? Learn to love ourselves the way we are. Life would be boring if we were all the same. I know I would rather be my unique self than identical to every other person.

Posted in Archive, December 2020

Genes and Dystonia

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Following on from yesterday’s Facebook live where we touched briefly on genetic causes of Dystonia, I wanted to delve into this a little more. DYT1 gene is the cause of some cases of early onset Dystonia and seems to be the one people are aware of. However there is a number of other genes that can cause Dystonia. Knowing whether it is a genetic cause is worth investigating as treatment can differ. For example I have the GCH1 gene which is the cause of Dopa Responsive Dystonia. I’ve lived with my symptoms for eight years and only recently found this out. I’m now awaiting to start on the appropriate medication for this particular type of Dystonia.

Taken from http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2015000400350#:~:text=DYT6%20dystonia%20has%20an%20autosomal,no%20sex%20differences%20identified9.

Being diagnosed with Dystonia for the majority of people is a long road, and more complicated still if you don’t know the medical history of your parents, grandparents etc. I haven’t had contact with my father for years but I know from my mum that he had hand tremors and was often called shakey. Now this could be caused by anything and that’s important to remember but based on the fact that my hands also spasm and tremor it’s a significant point.

When I was on the initial road chasing for a diagnosis only one doctor recommended genetic testing and this was never followed up on. I then spent years fighting against the label of functional Dystonia, which seemed to being applied purely based on my previous traumas. It became a frequent sticking point, one in which I often pointed out that fighting for treatment and belief was by far more traumatic at the time than issues I’d already worked through with therapists.

It was only after resorting to private genetic testing that we discovered that I had a genetic cause; I’d been blaming it on a horse riding accident for years purely because my neck spasms started shortly afterwards.

So does having a genetic cause change anything? Yes! Some types of Dystonia are far more likely to respond to Deep Brain stimulation, while others respond to specific medications better.

It is important to remember however that not all Dystonia causing genes are known yet. This is one of the reasons family history is so important. I only went digging into my genes after my maxfax surgon mentioned that their appears to be a link between Ehlers-Danlos Syndrome and Dopa Responsive Dystonia.

Other causes can be medication induced (tardive dyskinesia), brain injury, as a symptom of another condition etc. If you have concerns over the root cause of your condition please speak to your neurology team.

Posted in Archive, December 2020

Chronic Aspiration

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Today I had a meeting with speech and language to assess my ongoing difficulties with swallowing. Some days the issues fade into the background and are not to much of a problem, other times I struggle to swallow anything which has previously resulted in over a week in the hospital on IV fluids and having a temporary NG tube placed. I had no idea what to expect from the appointment as I’ve not met with speech and language before.

She came to my house, and was immediately met with Stefan and Evie talking a thousand miles a minute, both very curious over her PPE. We discussed my symptoms and long medication list and then she got down to examining me. She had a feel of my throat whilst I drank an ensure and picked up my usual spasms. While we were talking I was doing my usual post meal coughing, something that’s mild enough that I don’t really notice it, nor was I aware that my voice then became hoarse something my partner brought up.

The speech and language therapist explained what was happening was due to my spasms that I was aspirating during my meals. She’s arranging a barium swallow so they can get a look at the extent that this is happening. It also explains why I keep getting such bad chest infections; the last one left me needing two rounds of antibiotics and a course of steroids.

She mentioned the possibility of a PEG tube again, something that’s been circled around for a while, as well as refferal back to the dietitian. This will hopefully be after the barium swallow has been conducted as this should show what consistency of liquid will be best for me.

I’m feeling quite positive about it all after today’s meeting and will be hearing from her again in four week for an update.

Posted in Archive, December 2020

Life alongside Complex Regional Pain Syndrome

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Complex Regional Pain Syndrome (crps) first appeared in my life back in February 2006. I was 16, in my GCSE year and had just had my appendix removed after a gruelling week on the adult inpatient ward being poked and prodded by consultants. Whilst they ummed and erred over whether or not to operate I would be given morphine injections into my thighs. A seemingly normal procedure which resulted in any semblance of normal vanishing in to the fire of nerve pain.

Around a week after discharge I was back in A&E having my leg x-rayed. Despite mine and my mother’s instance that it couldn’t be broken as I had barely walked due to the pain in it; so there’s been no fall, twist or bang to break a bone. Instead I was living in shorts unable to bare touch upon my skin, I was walking on my tip toes and every movement was agaonizing. This time I was admitted to the children’s ward after they’d established no break and the whispers of crps emerged.

Crps info

My leg deteriorated rapidly to the point it was in a fixed dystonic position (not that anyone explained that at the time) I could not bare any sort of touch and felt like I was being burned constantly. I can vividly remember one day where the pain was so bad I was screaming for them to put my leg out; my brain so convinced that it must be on fire, despite my eyes seeing otherwise. They ended up sedating me with diazepam to help.

My stay on the children’s ward was not a short one. I was there for a total of six months, studying and completing my GCSEs and undergoing intensive physio therapy. I couldn’t be more greatful to the physio team. They impressed on me the importance of desensitisation of the leg. This essentially meant running different textures up and down my leg multiple times a day to reprogram the nerves to recognise that it wasnt a painful stimuli, we used things like make up brushes, sponges etc. The turning point though was when they introduced hydrotherapy into my treatment. I would be hoisted into the pool and spend the session pretty much holding the side for dear life trying not to scream to loudly. It was traumatic and still makes me want to cry thinking back on it but I am so glad that they kept me going with it. There is no doubt in my mind that it was the best desensitisation treatment.

My leg now can bare clothing and shoes, I don’t scream out when we go over bumps in the car or if there’s a windy day blowing my clothes. For the most parts the symptoms are there but quiet, only roaring their disabiling heads when I do something foolish like walk into a table edge, or spend to long on that side at night. The Dr’s told us they were fairly certain the morphine injections were to blame and I’ve refused all leg injections since.

Part of my Dystonia treatment involves three monthly injections. In 2015 following my usual jabs I found myself at the Dr’s being diagnosed with crps once again, this time in my right shoulder. I was struggling to wear clothes and move my arm. Thankfully we knew from last time how to act and I arranged hydrotherapy straight away and started my old desensitisation routine again. I still struggle to wear a bra, it causes immense burning but I force myself to for as much of the day as I can bare. Every 12 weeks the area is injected again and I have a flare up. It’s shattering but I take comfort in knowing that the desensitisation methods bring it back to a tolerable level

There’s a lot yet to be understood about this condition but to anyone who is suffering please remember you are not alone and my facebook page inbox is always open.

Posted in Archive, December 2020

Treatment Day

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Currently I’m sat in the rush hour traffic on my way home from seeing my neurologist in London. It’s been a long day which upon arrival I soon expected to end in despair. Despite email confirmation of my appointment, my slot had not been added on the system. I’m a big believer in to be early is to be on time, and this slightly over anxious side of me always shows itself before appointments; being extra early was something I was extremely relieved about this time as it meant that they had time to order up the injections.

Watching the lights go past.

Thankfully I was seen and as usual I left feeling ever grateful that I’m under my neurologists care. He’s been a rock for me these last 8 years and continues to be. He’s agreed with maxfax recommendations to start me on Sinemet and recommended an alternative to try if this one doesn’t have the hoped for impact. Maxfaxs theory is that there are a small number of EDS (I’m CEDS) who also have dopa responsive dystonia and that I may fall into this category. I’ve not tried any of these medications before so I’m keeping my fingers crossed and hoping for some sort of dent in symptoms.

I’m planning on resting most the journey home as the injection site in shoulder always aggreviates my complex regional pain syndrome. More on this tomorrow.